Team Talk Newsletter

Issue 1 Jay P. Klarnet, M.D., Editor-in-Chief Fall 2000

With this first issue of the Team Talk Newsletter we incite the members of the Team Talk support group to submit their ideas, suggestions, inspirational quotations, news stories, feature articles, and any other information that they may wish to share with the Team Talk community.

Team Talk support groups meet in the 1^st floor conference room of the Hematology Oncology NW, 1624 S. "I" Street

Group 1 sessions are held from 6:00 to 8:00 p.m. on the 1^st and 3^rd Tuesdays of each month. Group 2 meets from 6:00 to 8:00 p.m. on the 2^nd and 4^th Tuesdays.

Jay P. Klarnet, M.D.

The Team Talk support groups present an opportunity for those who participate to share whatever is happening. Many of the things we're experiencing in our lives are common to all.

In June of 1999 we started our first group. In the spring of 2000 we added a second group. Originally, I wanted time away from the office setting so I could become better acquainted with my patients and those who care for them. It was not my intent to be didactic. In fact, it was my expectation that meeting with my patients in this way would be a learning experience for me.

We've kind of fallen into a format that feels comfortable. We go around the room, introduce ourselves, and share our concerns with one another. We try to connect with each other. We talk about how we're feeling, what's happening to us individually, and put those issues uppermost in out minds out to the members of the group for their response.

Our meetings are also for caregivers. They have their own set of issues and emotions. Both sides are important. So, we encourage bot patients and caregivers to come. We try to speak in terms of our own individual emotions. Patients speak for themselves and caregivers also express their own concerns about what is happening to them in their lives.

We believe that the power to heal lies in faith, family, friends, and community.

The Team Talk support groups are for persons diagnosed with cancer and their caregivers. The intention is to create a community in which each person can speak about any concern he or she is experiencing receive support, non-technical information, resources, and reassurance.

Most Important is to ask yourself:
What do I want from TEAM TALK at this time -

There are many areas for discussion in the group sessions. Some of the various issues that are discussed by the people in the Team Talk community are the following:

The foregoing Discussion Areas are only a SAMPLE of some topics that are and can be discussed. More will be added, and we encourage and invite you to tell us what you want to discuss in TEAM TALK support group meetings and newsletters.

Kathryn Stivers, Team Talk Counselor

The Team Talk groups have had parties twice this year at Carol Magelseens's spacious home.

The winter party was held just before Christmas. People came with their food treat and a big buffet was enjoyed by all. Carol's beautiful holiday decorations added greatly to the festive event.

Upcoming Events

Christmas Hanukkah Potluck Dinner
Tuesday, December 19^th
6:00 - 8:00 pm.
Please See Opposite Page!

Yoga & More

For Those Who Have
Faced Cancer
(And their Partners or Friends)
In Tacoma. Free.
Call 253-403-1073
for details and reservations

Enhancing Relationships

Cancer Care Inc. Presents
"living with Ovarian Cancer"

Team Talk members demonstrated their willingness to investigate "evolving and new" cancer treatment strategies when they welcomed Naturopathic Physician Dr. Paul Reilly as guest speaker on March 21, 2000.

"We were surprised that there were so many people there! That was the night Henry and I learned we needed to change some of our eating habits," reported Heidi Rickgauer.

It was clear that Dr. Klarnet was very pleased and proud to introduce Dr. Reilly to the group. Notes on the presentation will be available soon.

By Marie J. Peck

When Dr. Jay Klarnet asked me if I would be willing to write a newsletter for the support group, he mentioned three special topics to be covered. One of them was "patient advocacy." What I have discovered is that there is no easy definition of the seemingly self-explanatory phrase.

On several occasions when I've been at Borders Books and Music having coffee while pouring over books on the subject of cancer, other browsers have approached me with advice or questions drawn from their own life experiences. That's probably one of the benefits of trying to stifle the demon of my own anxieties by seeing what hard-won knowledge others have shared through the medium of the written word.

"Write from your own experience," suggested one book lover. "Even if you help just one person it will be worth it." Actually, that is about the only thing that I can do. The harder I search for the simple definition of this phrase, the more elusive it becomes.

Advocacy and Choices. I come to the issue of "patient advocacy" by way of having become a significant caregiver for someone whose cancer had already reached stage three by the time that it was diagnosed. This diagnosis was pretty much a special birthday present for him just about a year ago. To try to calm down my own anxieties, I purchased the latest edition of Choices by Marion Morra and Eve Potts (Avon Books). I made a beeline for it because and earlier edition had seen me through my friend's treatment for skin cancer almost a decade ago.

What I learned from that experience is that there is a big difference between being the caregiver and being the person who just received the diagnosis of cancer. And in the days and months that followed I learned what a dismal it can be to read about cancer, trying to pass a crash course in an overwhelmingly complex subject.

I returned to Choices because I remembered it from the earlier days of the first cancer diagnosis as being my single very best source of information. At that time, neither I nor the other party had health insurance. So, getting reliable appropriate information was truly a challenge.

Also, the message of the authors of this reference compendium had made a point that was etched into my mind. They had written:

When a diagnosis of cancer is first made,
you have the greatest number of choices concerning the kind treatment best for you. Each decision may make the critical difference in outcome. The wrong choices close the doors to other options.

Advocacy vs. Activism. In the best of all possible worlds, the patient will become his most knowledgeable and effective advocate. But, whether the advocate is the patient or a combination of all three, today's advocate must recognize the need to become an active partner in reaching treatment decision.

Zarkarian also distinguishes between advocacy and activism. As cofounder of Can Act, a cancer activism support group, Zarkarian emphasizes the need for change In political and financial arenas. The example of AIDS activism is a model for the kind of advocacy the becomes activism. It runs the gauntlet from becoming an informed consumer of medical care to informing others, fighting for access to health care and costly medications, and raising consciousness of the urgent need for research funding.

Advocacy and Support Groups. Membership in a support group empowers the cancer patient in his role of advocate for his own care. Indeed, it may even be the very most effective way for a newly diagnosed cancer patient to learn about his choices and their significance in making decisions about treatment.

My friend was told by his primary care physician that he should become an expert on the specific kind of cancer which he had been diagnosed with and then ask the doctors on his treatment team the hard questions. That is a pretty tall order for the person who is still in a state of shock from having received his diagnosis.

Advocacy, the Internet, you Public Library, etc. In the beginning, I and my friend did internet search on "cancer of the esophagus" or "esophageal cancer." We found our doctors and read up about them too. Searching for the phrase "patient advocacy" yields: ACCA (Access to Cancer Care Alliance) at www.patientadvocacy.org; CCA (Colon Cancer Alliance) at www.ccalliance.org; and many, many more.

The Franciscan Cancer Center Resource Center for Health & Healing has a lending library at St. Joseph Medical Center, 1^st floor. (253-591-6805)

The Informed Cancer Awareness Network 1-800-272-ICAN at Tacoma General serves everyone in Pierce County. Program Manager Kathryn Rusk suggested: Everyone's Guide to Cancer Therapy, Complementary Cancer Therapies, and Ask the Doctor (on breast cancer, but generally useful).

Linda Smull, R.N., LMP (253-759-6226) provided me the Education Kit "Frankly Speaking about Colorectal Cancer." Generally useful as well. It might be possible to obtain a copy from 1-888-793-WELL or www.wellnesscommunity.org. Another source she suggested is Cancer Care at 1-800-813-HOPE or email info@cancercare.org. They offer a free publication, A Helping Hand: The Resource Guide for People with Cancer. (Ms. Smull will offer massage therapy upon her return from Beijing, China to learn "Tuina" as it is done in Chinese hospitals.)

Dennis Manor would like to share the following poem with Team Talk members. The original was in an "American Greetings Forget Me Not" card sent to him by his mother.